In a recent support group meeting there was lots of talk about the Family and Medical Leave Act (FMLA). It seems that not too many people are
aware of this Federal Law which provides for unpaid
leave from your job for up to 12 weeks per year. You must be
aware that the requirements vary from state to state so it would
be wise to check with your employer about this.
Our main article is the FMLA act which will give you more
information, but first some announcements:

Attention All Better Health Alzheimer's and Better Chat Members

Your Hosts BHost Ridl, BhostSTS, and BHost AC would like to wish
everyone a Happy Holiday. The Christmas and New Year's Day
Holidays fall on Fridays this year. There will be no scheduled
Chats on those days. However, the rooms will be reserved and
opened for any members that would care to chat.

The Ribbon Web Site

It has only been a few months since our web site got up and running. Already we have had over 1000 hits! Weather91, our resident computer whiz, has been
so faithful about keeping it up to date with the new issues and
we want to take a moment to thank him for his efforts.
We also want to remind our readers that this web site is a
tremendous source of information. There you can access back
issues of The Ribbon, get a copy of the 7 Stages of AD, the
Caregivers Bill of Rights and so much more.

There is also a chat room at this site which is unhosted but open
24/7...please feel free to use this room to meet friends.

We did experience some difficulties over the past few weeks with
gaining access to the site but all is well now and if you haven't
viewed this site, please do so.

Be sure to walk through the Dedication Garden, there are some
beautiful thoughts there. Enjoy

Key Provisions of
the Family & Medical Leave Act of 1993

The Act applies to employers with 50 or more employees for
each working day during each of 20 work weeks in the current or
preceding calendar year.

Only those employees who have been employed for a total of
at least 12 months and have provided at least 1250 hours of
service during the 12 months before leave is requested are
eligible for the benefits of the Act.

An employee who works at a work site at which the employer
has less than 50 employees is not eligible, if the total number
of employees that the employer has within 75 miles of that
worksite is less than 50.

The act requires covered employers to grant eligible
employees up to 12 weeks of unpaid leave during any 12-month
period for the following reasons:

Birth of a child;

Adoption of a child or the placement of a foster child;

To care for a spouse, child, parent with a serious
health condition; or

Where the employee has a serious health condition which
renders the employee unable to perform the functions of his or
her position.

A "serious health condition" is defined as an illness,
injury, impairment or physical or mental condition that involves inpatient care in a medical institution, or continuous treatment by a health care provider.

The employer may require an employee to utilize accrued
vacation, personal, family or sick leave for any part of the
12-week leave period.

An employer may refuse to grant leave on an intermittent or
reduced leave schedule where requested for birth or placement of
a child for adoption or foster care. However, the employer
must permit an employee to take intermittent leave or work on a
reduced schedule where requested to care for a sick family member
or due to the employee's own serious health condition.

An employee must provide the employer with at least 30 days
notice of his of his or her intention to take leave when the need
for such leave is foreseeable. Otherwise, as much notice as
practicable is required.

An employer may require that an employee provide a
medical certification of a serious health condition of either the
employee or a family member.

An eligible employee who takes leave under the Act must be
restored to his or her old job; or, to an equivalent position
with equivalent pay, benefits, and other terms and conditions of
employment. However, the employer may deny job restoration to
certain highly-compensated employees if:

necessary to prevent substantial and grievous economic injury
to the employer's operations; and

the employer notifies the employee of its intent to deny
restoration when the employer first determines such economic
injury would occur; and

The employee has the option of determining whether or not to
cut short his or her leave and return to work.

The Act does not pre-empt collective bargaining agreements
and company benefit programs which provide more generous family
or medical leave rights.

The Act may be enforced by employees bringing civil suit in
any state or federal court or by the Department of Labor. Any
employer found to have violated the Act will be liable for:

Wages and benefits lost by reason of the violation, or

Actual damages where there is no loss of wages such as the
cost of hiring a caretaker; and

PHILADELPHIA, PA -- Dec. 4, 1998 -- In a new study by University
of Pennsylvania Medical Center researchers, free-radical activity
was found to be roughly doubled in the frontal and temporal lobes
of the brains of people who had died of Alzheimer's disease when
compared to the same regions of normal brains.

Additionally, the frontal and temporal lobes were the only parts
of the brains where the levels of two recently-identified
biochemical markers of free-radical tissue damage were seen to be
elevated. This is an important observation because these two
areas of the brain, critical for memory and intellectual
function, are the ones most affected by the disease.

A report on the new findings appears in this month's issue
of the FASEB Journal.

"The strength of what we found was that, firstly, these
markers were elevated only in the affected parts of the brains of
people who died of Alzheimer's disease," said Garret
FitzGerald, MD, chairman of the department pharmacology and
senior author on the report. "Secondly, the markers were not
elevated in the same parts of the brains of people who died of
other causes. This suggests that what we're looking at are
sensitive, quantitative indicators of disease activity."

The most abundant of the two markers was also found to be
significantly elevated in the cerebrospinal fluid, or CSF. The
importance of this finding is that the CSF is a relatively
accessible body fluid, so that extensions of the current work
into living patients presumed to have Alzheimer's disease will be
possible. Indeed, such studies have already begun at Penn. Likely
to emerge from these investigations will be more accurate methods
for disease diagnosis, improved assessments of drugs against the
disease and a clearer overall picture of the disease process.

For example, results from epidemiological studies suggest that
anti-inflammatory drugs (such as ibuprofen) and antioxidant
compounds (such as vitamin E) both offer some protection against
Alzheimer's disease. Although inflammation is linked to oxidant
stress and its associated tissue damage, it would be useful to
know whether and to what degree these processes, independently or
in concert, drive the progression of the disease and which class
of drugs -- anti-inflammatories or antioxidants -- offers the
greatest potential benefit to patients?

"People debate the initiating cause of Alzheimer's disease,
but there's general agreement that there is an inflammatory
component and inflammation is associated with oxidant
stress," FitzGerald said. "So, it becomes relevant
whether drug targets associated with inflammation will represent
distinct or overlapping targets from those involved in oxidation.
In other words, if we give a patient an anti-inflammatory, should
we expect any additional benefit from an antioxidant vitamin or
drug? Currently, we don't know the answer. Our ongoing studies
should begin to address that question."

The innovative measurement technique used in all of these
experiments was developed in FitzGerald's laboratory in
collaboration with Joshua Rokach, PhD, a chemist at the Florida
Institute of Technology and co-author on the current report. It
assesses the levels in body fluids or tissues of certain
biochemicals called isoprostanes. These isoprostanes are stable
by-products of free-radical catalysed damage to lipids, or fatty
molecules, found throughout the body, and they serve as
quantitative markers for that damage.

How do you define the term "caregiver" in less than a
thousand words? As a parent "caregiver" for 17 years of
a child with severe handicaps and for one year of a mother with
Alz. (now in a nursing home), I have to say it is a title which
deserves more respect than it gets!

A caregiver gives of oneself to assure that the person in need
receives the necessary care to carry on his or her life safely
and with dignity.
A caregiver sees to it that the basic needs of food, clothing,
cleanliness and shelter are met by the person with need.
A caregiver must also know how to meet that person's emotional
needs without becoming co-dependent.
A caregiver never loses sight of his/her own needs and
understands that in order to care for a loved one, you must also
care for yourself.
I could probably think of a few hundred more definitions, but I'm
trying to keep this brief.

The term "child care" has been accepted. The only difference in
"child care" and "caregiver" is the age of the person to whom the care is given.

A caregiver is a person that an adult needing care is dependant
upon for his/her safety. Without that caregiver, the quality of
life for the adult needing care would be diminished or endangered.

A caregiver's tasks begin in the morning. First we check to make
sure the "adult needing care" is alive. Next any help
with bathing, dressing, hair styling, and makeup is given.

Now for breakfast, even if the ANC can prepare his own coffee
& toast, the caregiver has to be close in case of spills or
fire. Sometimes & most times, the caregiver needs to prepare
the food and sometimes feed the ANC. After that, cleaning the
dishes & the ANC comes in. One needs to make sure the ANC is
brushing his teeth (even tho my mom does NOT floss--no matter
what!). When they get their partials stuck, it's fun to try to
take someone elses teeth out! You also have to be sure they are
properly cleaning themselves after showers, bowel movements.

Next seeing to daily activities so the ANC has a life. Taking
them out or involving them in an activity at home to make them
feel successful and/or needed/loved.

There's always lunch & supper. Same as breakfast, just
different times of day.

Don't forget the manicures & pedicures, the ANC cannot do
these anymore & I have several foot dr bills to prove it.

The ANC needs help with washing clothes, vacuuming, dusting,
changing beds, arranging closets, arranging drawers, putting up
towels, etc. Of course, the ANC may need these things done for
them instead of just help.

A child can operate a tv and a vcr. An ANC cannot. An ANC cannot
learn new things if they have short term memory lose.

At night, the floor needs to be picked up so the ANC doesn't
fall. The bathrooms need to be kept clean by the caregiver
because the ANC cannot clean thoroughly any more.

I had monitors installed so I can listen at night or any time i
feel she might have a problem. Makes nights interesting since my
mom snores.

I keep her checkbook. Sometimes I have to make out the check and
have her sign them, which takes 3 times as long as it would if I
just did it myself. Have to keep her interested & the mind
active. Other times, I have to completely pay bills because she
is not capable.

Taking an ANC out also makes things interesting. With a child,
you have a stroller & a diaper bag. With an ANC I have a
walker--later a wheelchair, and a bag with a change of clothes,
bandaids--because they somehow always need one, ice to put on
abrasions, ice packs for the ice, and ointment for abrasions or
dry skin. Only difference is the bag is bigger. Also need plastic
bags or protection for car seats in case of incontinence.

A caregiver is a person that an adult needing care is dependant
upon for his/her safety.

My own definition:
The Alzheimer's Caregiver:
Pre-requisites: (* If you want this choice position...*)Endless patience to cajole your loved one into
cooperating with little necessities of daily living, like getting
out of bed, going to the bathroom, getting in and out of the car,
brushing the teeth, eating, dressing, interacting with her/his environment.More Endless patience for dealing with Social
Security, the bank, Medicare, Medicaid, Social Services, the
hospital, homecare helpers, adult daycare.More Endless patience to endure the thoughtless and
insensitive remarks and false guidance from those only moderately
informed about the disease.Loving, caring and nurturing of a loved one so
confused by the disease process that their behavior at any given
moment is completely unpredictable; for example wandering away,
going door to door to ask where her/his mother is, trying to pay
for lunch with a soiled Depends, managing to order a glass of
wine by holding up one finger and saying the word
"same", calling a daughter "Mommy", Debi, Audrey, Frank or Howard, resenting the
caregiver being on the telephone and removing all clothing as a
consequence, finding a pair of scissors and cutting up all of
her/his clothing, talking for hours with the mirror. Loving, caring and nurturing of a loved one that
can no longer do a single thing for her/his self; feeding,
bathing and dressing take an incredible amount of time, patience
and energy. Continuing to reach out to a loved one that is
rarely responsive, knowing that every now and again you will see
a shining, glowing expression and response that reminds you that YOU
do make difference. : )Debi Owens

Hello, again, all..
I just wanted to share another great Caregiving website I came across. Caregiver Network
(http://www.caregiver.on.ca/)

I was my Father's caregiver until he passed away one month ago. I
gave my Father all the love I could. I watched out for his
well-being. And I tried my darnest to do what HE would have
wanted me to do for him. My Father died of heart failure,
complications of Alzheimer Disease on October 29, 1998 at the age
of 74. On that day, my life was changed again. One of the other
times my life had changed was when my Mother died and I began my
4 1/2 years as Dad's primary caregiver. Before my Mother's death,
it was discussed that Dad would live with me or one of his other
children or go into a nursing home (the latter he preferred, so
he wouldn't be a burden to anyone).

To all our surprise.....Dad wanted to live by himself, on his own
with his new found freedom (Yikes!). Dad was in the early stage
of this horrific disease. I only live 10 minutes away...so with a
lot of help from the other sibs to make his house "Alzheimer
Friendly"...it was agreed. For the next year and a half Dad
did what he wanted to do, with the help of all his friends,
family and even his own town. He was in relatively good health,
except for the Alzheimers. He did a lot of walking.....and his
family did a lot of praying for his safety. I toke all the safety
measures I could. I notified local police and registered him in
the "safe return program at the S.E. Penna Chapter of
the Alzheimers Association.

Slowly over that year and a half, as Dad slipped further into his
affliction; it became increasingly difficult to handle his daily
tasks. HE became fearful and decided, on his own, that it was
time to go somewhere. We found an assisted living facility,
specific to Alzheimers and other dementia, where he could be
safe, and happy; and not have to worry about laundry, zapping his
meals, and the tideous chores of personal hygiene. He had worked
hard all his life for the money he had.....and I saw no reason
not to spend it on his happiness. He loved this place....until he
started having incontinence problems.......This was the start of
the final stage of his Alzheimers disease.

After a year and a half of living safe and happy (not without the
normal disease progression problems though)......he was afraid.
No not afraid.....he was terrified. Things began happening
to him that he could not understand or even fathom. I had to make
health decisions for him now.....which I had
trouble understanding. Dad went thu the normal aggression stage
and came out of it worse off. It caused more heart
troubles.....it was discovered he had recently suffered mini
stokes in his brain....and fluids had built up in brain
ventricals. He had to be placed in a nursing home facility. This
was his wishes...he also had a living will that spelled
out for me what to do. And I did it with only thoughts of what he
wanted me to do.

Our family was lucky, in the fact that Dad did not last long
suffering in this very sad, sad, sad stage of the disease. Stage
3 began in May of this year. He lost his battle only six months
later...and I lost my Father, my best friend, MY CHILD. All I
ever did for him was to try to give him the best care and all the
love I could. And I did care for him.....in many, many, many
ways. And I did love him to the best of my ability....and you
know what? That was the easy part...being his caregiver.
Unconditional love! He taught he that. This is what being a
caregiver is.

Dated 11-27-98
Dear Karen,
Please forward our issue of The Ribbon to otherswho need it more.
We have greatly benefited from your invaluable efforts, and have
shared the newsletter with others who have an interest.
My Dad passed away Sunday of liver failure, peacefully and
quickly, and very unexpectedly.
Thank You again for a tremendous service.

My father ended his battle with this horrible disease yesterday. I was on my way to try to
get him to eat some food. He died before I got there. We'd just
put him in a nursing home three months ago and the decline was so
fast. It's funny....I kept saying I hoped he would die, now I
can't stop crying and wish I had that "last time" to feed him his lunch.

HIP HIP HOORAY....so glad that you/we took the time to thank our host's for all their hard
work...now I would like to personally thank you two for the
FANTASTIC job you do on the newsletter....without you we would be
so out of touch......from the bottom of my heart

Thanks again for another
wonderful issue. I often wait to read mine until I
"feel" the need. It alsways occurs on one of those
"bad" days. I wish I could change things, but know I
can't. Doesn't always help...

Hi,
Thanks for a terrific Thanksgiving issue of the Ribbon. I have
learned so much about how to deal with my care of my AD mother.
Many thanks!!!

My mom's doctor put her on Aricept, hoping that it would improve
her condition & memory. All it acted like was a stimulant,
but has not improved her thinking at all. She has gotten into
lots of mischief, wandering around town, actively more angry etc
etc. My daughter & I decided to take her off the medication
as it seemed to be causing us much grief. She does seem calmer
now. Anyone have anything positive to say about this drug? Any
one also have a bad experience with it? Thanks, Bev

I wanted to write to you and thank you for always sending me this wonderful news letter
every month, you are truly a wonderful, loving, thoughtful person
and I appreciate everything you do.

My mother was diagnosed three years ago, and her children have
done nothing but fail her ever since, including myself. We have
continued to fight among each other about who can take care of
her, who can help put money in to help my mother live day by day
since she has nothing, and accuse each other of everything!! We
came from a divorced family and were never really brother and sisters, and now we've ruined
any hope of that ever to come. My mother lives mostly with me and
my husband, who was diagnosed with a serious illness himself, so
I take care of both of them. My brother takes her on Thursday
afternoon to Sunday evening to give me some break, but
financially he does nothing. We have two other sisters who do nothing!
I was wondering if any other members out there have the same problems that my family
is experiencing? The constant fighting to get the other siblings to do their fare share?
If there is anything we can do to make the other siblings
financially help take care of our mother, because she is wiping
out my finances. I just got the "Free Medication Program" off the Ribbon
and am going to try that since her medication is so expensive! Thank You to Psears
123!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I guess I'm just going crazy with everything, and feel as though
there's no hope! My marriage is in jeopardy, my children are so
unhappy, and my brother and sisters don't care!

Thank you so very much for sending me issues of The Ribbon. Sometimes it takes me a while to
have time to sit and read it, but when I do, I certainly learn to
appreciate what I have learned, done and most importantly
appreciate the people I have met in person and on line who have
been supportive of my endeavors.

Although my 82 year old mother does not have Alzhiemers, she did
suffer an embolic stroke 7 months ago. I am the younger daughter
of 4 children, with a Down Syndrome brother following me. Morally
and legally, I am the caregiver , legal guardian and POA for both
these "dependent people". I defied the "odds" and was determined
to push her to the limit to get her as far
back to normal as possible. Did I get support from my two older
siblings??? MINIMAL if any....but, I am learning to deal with
that personal aspect separately. My mom is making progress. The
sacrifices seem great, but it's what I want to do. My younger
brother has learned the value of "family" and caregiving also. In spite of his "handicap" he has
behaved more normally than my two older siblings, and helped me a great deal.

As long as she has physical health on her side, I know Mom will
make it slowly but surely.

I have realized in the beginning of these past seven months what
many of The Ribbon readers must deal with every day, for long
periods of time. I understand fully what decisions have to be
made in spite of the heartbreak. I'll never forget the time I
moved Mom from one hospital setting (due to insurance) to a
sub-acute program closer to home for more rehab. She looked at me
as if I just stuck a knife in her heart and refused to speak to
me for two days, even though my brother and I visited her EVERY
DAY of the 8 weeks that she was hospitalized. Yes it hurts, but I
felt it was the best thing for her....and it was.

Yes, she eventually came back to her own house, yes she is able
to care for her personal needs (as well as can be expected), but
although her "services" have run dry, I and my brother
are now her therapists (physical, speech and occupational). I
have lost most of my social life and some friends who probably
werent friends to begin with. I have made new friends in their
place who understand....alot like you all.

Please continue to send me The Ribbon. It helps me mentally and
spiritually.